I feel incredibly stagnant.
I have felt like I just need a door to open somewhere. Somewhere, just a crack, I’ll kick it all the way open myself. I need a J.O.B. I need one A.S.A.P. I need something promising to happen to me. I give and give and pray and put in a lot of effort towards wishing other people well, sometimes I just wallow a bit and wonder, “ok, I really am happy and all, but what about me?! When may I expect something back, when will it be my turn to receive?!” So when I feel like this, I resort to the only logical thing – giving more.
I passed my law exam and finally got my pharmacist license. [Uh, now what?] I finished the makeup homework from my course that I almost failed. And promptly, I was down for the count. Three endless weeks of trying to sleep, tending to migraines, and doing my best to hope it’ll pass sooner than later. Four days of no sleep followed by three days of incapacitated migraine, then a few hours of rest only to battle a constant burden of being uncomfortable. And I think the streak ended yesterday. So I’m writing.
The little time in between this battling, I was redirecting my attention back to what matters most to me. People. I have an extraordinary amount of love to give and I have an immeasurable amount of compassion for people. I would try my best to spend one-on-one time with some of my friends. It tires me out a bunch but it is honestly the best investment of my time when I’m not able to do much else. Not only am I giving my individual attention to them and sharing my woes intimately with them, I am keeping myself connected.
I luckily spoke with my friend from high school – who I have always admired since high school band. I read her blog daily and am so amazed that I never knew how incredible she was at writing. I asked her how she gets the energy to remind her self to write every day, and she said “it’s what I’m passionate about.” How did I not know this? I have been passionate about writing since I could hold a crayon and squiggle!
I never want to comment on her blog, because I don’t want to link my blog to it and thus pull the curtain off my anonymity. It’s important that I have a place to talk about my struggles in an uncensored and candid forum. However, I shared my blog with her because she is so candid with her life and I have utmost respect for her passion. I comment on her facebook instead, or tell her through a private message what I thought about her writing. And after talking with her two nights ago, she said something completely profound to me: Start writing again.
Well, I do… and sometimes all the time. But about things that are trivial – like mommy issues or why I find all boys to be duds and how to break up with them without breaking their hearts. Things that ruminate in my head that I don’t really care about but I pay mind because it feels like these things need to be settled and dealt with to be cast aside. However, I don’t think writing about these things to deal with the ‘here and now’ stuff is moving me in any direction – but when I read about concussions and reasons why LENS helps my vision and why my resting heart rate is consistently at 130… I want to move forward, I want to find a way to be creative and announce it to the world and to educate and inspire. I want to be the genius I used to be and I want the endurance to be that genius at all hours of the day without getting tired or falling short to a migraine.
I am three weeks behind on my homework – yes, after finally getting caught up I went down for the count! I am eleven assignments behind. ELEVEN. But nobody’s dead yet. And I think I just needed to find something to write about. I needed to find a little fire. I needed to read about what I’m passionate about; to get excited about solving the mystery of concussions and brain injuries and the desire to teach the world and make it a better place. So I’m incredibly behind and I’m feeling absolutely stagnant, but I needed to write.
Thanks, C. You’ve done more than you can imagine. More than most. Although, I can’t promise everything will now be hunky-dory.
Showing posts with label personal stories. Show all posts
Showing posts with label personal stories. Show all posts
Tuesday, October 27, 2009
Sunday, April 19, 2009
How Strong Can I Be - blog highlight
ResilientHeart writes a ton about her journey through finding resources and struggling to understand her 'new self' following mTBI. Really, it's the fight of her life.
Today, she wrote a beautiful post titled How Strong Can I Be. It wraps up some of the frustration and grief that is often experienced on the road to recovery. Check it out!
Today, she wrote a beautiful post titled How Strong Can I Be. It wraps up some of the frustration and grief that is often experienced on the road to recovery. Check it out!
Despite the Boston Celtics Loss today, Brian Scalabrine makes my Headlines!
Logo taken from NBA.com in honor of playoffs beginning for the reigning champs
All Tough Boys can learn a little something from Boston Celtics' Brian Scalabrine's Story:
1) Post-concussion syndrome isn't very understood - but it isn't very fun either.
2) When people are injured, often physical signs are easy to see. With concussions - be honest with yourself and others on how your feeling.
3) You will get better. It can get worse. But it slowly and gradually gets better.
4) Recovery happens. You often can't push it.
5) Your temperament might change. Scalabrine's wife tracks his moods!!
6) Think positive. Even optimists benefit from support!!
7) Go Celtics :)
8) Go Bruins :) [and please be gentle... despite playoffs...]
9) Go Sox :)
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I saw this article about Brian Scalabrine of the Boston Celtics from Boston Herald.com a few days ago and was EXCITED!! I have been curious about Scalabrine's concussion since it happened in February - announcing him BENCHED FOR THE REST OF THE SEASON?!?!!
Don't get me wrong, I haven't had a lot of juice 'upstairs' in my own head for a while to really pay attention to every detail in the sports world... so I didn't go digging for information. I'm still waiting to hear if Lugo, from the Red Sox, might have had some more serious complications from a concussion last season that has led him to being MIA most of this season (in conjunction with other injuries, etc). Of course, I'm still wondering!
With Boston sports playoffs just off the hook in my back yard - and I want SO badly to pay attention to all of it - this article just made me thrilled to hear about Scalabrine finally!!
And well - the verdict - he has PCS. And the prognosis - well, uhhh - wait and see? Time and rest? Here are some quotes I liked from the article:
Can a touch of pain lead to a spiral away from normal living?:
When the symptoms were at their worst, and Scalabrine suffered from repeated headaches and dizziness that interfered with basic comforts like sleeping or reading a book
Coach Doc Rivers said:
“I just wanted him to make sure that he’s being honest with himself. It’s different from other injuries, where you can look at someone like Kevin(Garnett) and tell from his gait how he’s doing. We literally can’t get inside Scal’s head with this.”
Scalabrine input:
“But I feel that one day I’ll consistently get better and better and I won’t have any more of these setbacks. Even coming now and watching the games there’s a couple of symptoms.”
I know exactly what that might be like. I went to a Celtics game in November - near the time of my first Bruins game. I don't remember the second period even though I know I was watching it... in a seat. And I zoned out for the ENTIRE THIRD PERIOD! I was actually just walking around trying to 'calm' myself... or look normal despite trying to avoid people and noise... until my friend texted me "where the hell are you?! you've been gone for 15 minutes!!" Talk about a wake up call... or text! I was all sorts of turned around!
This tough boy has a lot of brain to him. I'm glad he had the sense to even ask his doctors about what 'kind' of concussion he might be dealing with. But more importantly, in the following quote, I can just see what I was like a year ago - scared out of my mind that I lost my brain! Wanting answers and not getting any. Wanting SOMEONE to tell me I was going to be OK... that I was going to get it back... that the pain would get better... the symptoms are 'normal' or probably better stated: "expected." Scalabrine's inquisitions are not far away from those questions that I had - and I really wish I could have worked side by side with the doctors who are "experts." Who are they?? How can I get a job with them?? Are they looking for a pharmacist that has personal experience with concussions?! (and are they willing to let me start working real small hours and build up my endurance?????????)
This tough boy has a lot of brain to him. I'm glad he had the sense to even ask his doctors about what 'kind' of concussion he might be dealing with. But more importantly, in the following quote, I can just see what I was like a year ago - scared out of my mind that I lost my brain! Wanting answers and not getting any. Wanting SOMEONE to tell me I was going to be OK... that I was going to get it back... that the pain would get better... the symptoms are 'normal' or probably better stated: "expected." Scalabrine's inquisitions are not far away from those questions that I had - and I really wish I could have worked side by side with the doctors who are "experts." Who are they?? How can I get a job with them?? Are they looking for a pharmacist that has personal experience with concussions?! (and are they willing to let me start working real small hours and build up my endurance?????????)
“You go to the extreme - like there are six football players who had some kind of self-inflicted death, you read about them. I actually brought that up to my doctor, and he said that’s a different kind of concussion from what I have. I don’t have a situation where the brain hit the skull and then swelled.”
Here's a great tip that Brian gave: Bless his wife Kristen's soul for putting up with the man through his mTBI recovery! I bet she could be a spokeswoman for caretakers and family who deal with the worst of the worst!!
Scalabrine:
“My wife is always keeping track of my temperament, seeing that I’m consistent with my temper, and not getting really aggressive because of this. The only thing I really have are the headaches, which I’m slowly getting rid of.”
Mark Murphy concluded his article with the best sentence that should be taken to heart by anyone recovering from post-concussion syndrome... because you might be out of work, but to hell to those who think it's any sort of vacation!
After all, even the most positive thinkers need support.
Somebody get Skalabrine my number - I want him to start running my Tough Boy Initiative on a larger scale!! Hope you feel better soon!!!!! And thank you for being so honest to so many people despite how normal and fantastic you look!!!!!!
Go. Celtics.
Go. Bruins.
and of course... Go. Red. Sox. Yay!!
And as a side note - I was watching both the Sox vs. Orioles and the Bruin vs. Montreal Game 2 tonight with a friend... and although it was a lot to really pay attention... I remember looking at one of the smaller screens showing the hockey game and thinking - Holy COW. I can read the small print. I can see the score. I can SEE the seconds winding down. I can SEE the penalty clock in the corner. I CAN SEE CLEARLY the three white letters of the score bar AND their scores (5-1 by the way ;) haha) But my vision had been so horrible that even 6 months ago it was as if I wasn't wearing glasses and it was fuzzy and I couldn't figure it out. It still gets that way sometimes... but my vision was amazing today :)
NEdream: 1 Concussion: 0
Let the playoffs begin!
Monday, April 13, 2009
High School Tough Boys
An article from Cumberland County, PA introduces another Tough Boy:
Read about Kyle Chester Here
Read about Corey Bischof Here
Read about Kyle Chester Here
Read about Corey Bischof Here
football dude taken from graphicsfactory.com
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The Story of Kyle Chester
I stumbled on another article highlighting concussions today. In Pennsylvania, Kyle Chester was one of those tough boy kids who just wanted to play football. The article describes exactly what I mean by "Tough Boy," quoting Kyle:
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The Story of Kyle Chester
I stumbled on another article highlighting concussions today. In Pennsylvania, Kyle Chester was one of those tough boy kids who just wanted to play football. The article describes exactly what I mean by "Tough Boy," quoting Kyle:
“Most kids say, ‘I’m fine,’ and want to play to impress dad, coaches or a girlfriend,” he said, calling it an adrenaline rush. “That’s all I wanted to do was play.”
As unfortunate as Kyle's situation has become I congratulate him for standing up in the face of concussions! Thanks for getting your story out there!!
The Loss of Corey Bischof
An additional story from Cumberland County, PA creating awareness of how personality changes, thought to have occurred from concussions, can be devastating to families. Depression resulting in a teen suicide.
ImPACT testing
Article mentions the testing that has been adopted at the Cumberland Valley High (and I've read of other states that have adopted this same testing for high school sports).
As part of this initiative, each athlete in grades seven through 12 undergoes a neuropsychological assessment through the program. The test provides an objective measurement of attention span, working memory, sustained attention, reaction time, response variability, visual and verbal memory, selective and non-verbal program solving to establish a baseline assessment.
Baseline retests are given in ninth and 11th grades.
If a sports-related concussion should occur during the season, the athlete is retested with ImPACT. Those results are compared to the baseline, which assists the medical staff in making return-to-play decisions.
It's saddening to learn of a loss at such a young age. Grateful, however, that Corey's story is being shared during such a vulnerable time to learn about concussions. I send my blessings to his family.
My Two Cents today
If I find any other examples, I'll post them along! I think I read somewhere that NJ Brain Injury Association agreed to pay for half of the tests in their high schools - but I forget where I saw it... But how valuable could this be? Imagine how different our communities might be if we invested in better brain protection early on like this?
However, brain injuries have been happening for years to all sorts of people. And the great thing, is that you can recover. It just takes some time. And it's frustrating. It's painful. It is very hard to leave the "old you" and recognize the new directions that you need to move in. It is very hard to assume a new path, accept the losses, and become one of the many people in this world who has shaped their life much differently than where they originally thought they could go.
But you do keep going, somehow. It is possible. Recovery is difficult but possible.
If I find any other examples, I'll post them along! I think I read somewhere that NJ Brain Injury Association agreed to pay for half of the tests in their high schools - but I forget where I saw it... But how valuable could this be? Imagine how different our communities might be if we invested in better brain protection early on like this?
However, brain injuries have been happening for years to all sorts of people. And the great thing, is that you can recover. It just takes some time. And it's frustrating. It's painful. It is very hard to leave the "old you" and recognize the new directions that you need to move in. It is very hard to assume a new path, accept the losses, and become one of the many people in this world who has shaped their life much differently than where they originally thought they could go.
But you do keep going, somehow. It is possible. Recovery is difficult but possible.
Sunday, March 29, 2009
Brain Injury Press
Photo from Natasha-Richardson.orgI know Yahoo.com doesn't have the best cited information - but I stop by for some small information and headlines sometimes when I'm not feeling my best. I like to continue to read, even when I don't think I can comprehend much... and this is the kind of small reading I tend to go to!
Anyway...
The news of Natasha Richardson's death is absolutely horrifying. However, I feel this couldn't be a better time for the increased awareness of brain injuries and just how severe they actually can be.
Since the day of my accident, I have felt that somehow I've been affected at a moment where NOBODY knows much about mTBI. And as much as this fact has stunk up any easy recovery... as the months go by more and more situations arise which start making mTBI a HUGE deal on this planet. This is just one example of the awareness that I feel I might be in the middle of when I'm finally well enough to make a stand and become an educator and advocate about the horrifying ordeal that concussions can lead to.
A few days following Natasha's skiing incident/death - I am not sure the exact date, but had thought to blog about it! - I had noticed in the bottom right of my browser on Yahoo.com "Today's Top Searches" that "Brain Injury" was number 6!!!
Now, I didn't ever think I was going to die. I was in excruciating pain for a good 8-14 months, but I never felt my life was at risk. I had significant pain which I thought I was dying or going to have a seizure or pass out and hit my head again and bleed to death (dramatic I know...). I hadn't had a CT of my brain at the time my head was hit, but my CT of my neck was less than impressive and my MRI of my cervical spine a month later wasn't showing anything significant either. In February, I finally had an MRI of my brain and everything seemed clear. I was thrilled to see I had a brain!! wooooo!!!
I hope this link works. This is a pretty inspiring video of a little girl who was hit in the head by a baseball and was 'talking and she was fine' and had 'a bump on her head, but no symptoms whatsoever' until she started to have a migraine a few days later... she had a similar acute epidermal hematoma (significant bruising/blood clot) to what killed Natasha.
It makes me wonder if I might have had a similar hematoma that disturbed some of the blood flow to the neurons I've had to rebuild over the last year plus. I'm just thrilled this girl was so strong and can't imagine what pain she might still be experiencing - but bless her having the strength to forward the brain injury awareness to the world.
Anyway...
The news of Natasha Richardson's death is absolutely horrifying. However, I feel this couldn't be a better time for the increased awareness of brain injuries and just how severe they actually can be.
Since the day of my accident, I have felt that somehow I've been affected at a moment where NOBODY knows much about mTBI. And as much as this fact has stunk up any easy recovery... as the months go by more and more situations arise which start making mTBI a HUGE deal on this planet. This is just one example of the awareness that I feel I might be in the middle of when I'm finally well enough to make a stand and become an educator and advocate about the horrifying ordeal that concussions can lead to.
A few days following Natasha's skiing incident/death - I am not sure the exact date, but had thought to blog about it! - I had noticed in the bottom right of my browser on Yahoo.com "Today's Top Searches" that "Brain Injury" was number 6!!!
Now, I didn't ever think I was going to die. I was in excruciating pain for a good 8-14 months, but I never felt my life was at risk. I had significant pain which I thought I was dying or going to have a seizure or pass out and hit my head again and bleed to death (dramatic I know...). I hadn't had a CT of my brain at the time my head was hit, but my CT of my neck was less than impressive and my MRI of my cervical spine a month later wasn't showing anything significant either. In February, I finally had an MRI of my brain and everything seemed clear. I was thrilled to see I had a brain!! wooooo!!!
I hope this link works. This is a pretty inspiring video of a little girl who was hit in the head by a baseball and was 'talking and she was fine' and had 'a bump on her head, but no symptoms whatsoever' until she started to have a migraine a few days later... she had a similar acute epidermal hematoma (significant bruising/blood clot) to what killed Natasha.
It makes me wonder if I might have had a similar hematoma that disturbed some of the blood flow to the neurons I've had to rebuild over the last year plus. I'm just thrilled this girl was so strong and can't imagine what pain she might still be experiencing - but bless her having the strength to forward the brain injury awareness to the world.
My mother also told me that she heard Obama recently mention in one of his speeches that he was awarding troops or veterans increased funds towards treatment of brain injuries - anyone hear this too?
I know I'm not the best at citing references, etc... but I'm working on it.
Thursday, March 5, 2009
March is Brain Injury Awareness Month!!
Pass it on, Tough Boy:
1) March is Brain Injury Awareness Month!! Spread the word!!
2) Still feeling that pain? Look into acupuncture or craniosacral therapy.
3) Do your body good! Avoid the junk. Replace your sugars and simple carbs (like white breads/pastas) and bring in some more whole foods, veggies, and fish that have tons of Omega-3s!
4) Get moving! Just a short walk outside, ten or fifteen minutes. I know, its tough... but it'll help!
5) Check out the other blogs I've collected under "Personal Stories" to the right. They've all got some insight on their own struggles - which might be just like your own.
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Just a quick stop by - as my situation hasn't dramatically changed at all. And I'm quite exhausted still.
But March is Brain Injury Awareness Month!!! How could I not stop by to leave some support to my fellow supporters and those looking for some relief! Spread the word and start creating awareness for our invisible struggle - who knows who'll notice, who knows who will be grateful to have found someone they can relate to, who knows what an impact it could make?? Just send over this link and start the discussion!
Relaying Tips
Got some awesome tips from some great online supports I've been leaning on (whether they know it or not!). Feel free to read verbatim what they wrote in the comments of my last post!!
Colette mentioned that her experience with acupunture and craniosacral therapy - often found at places that do massage and naturopathic therapies - has
help[ed] the pain, energy and feeling more balanced.
Unfortunately, you may find that most insurance companies will not pay for these services.
Broken Brilliant stopped by to remind me of healthy choices. These really do make a difference!
it's easy for me to make poor food choices, and then I can't figure out why I feel like crap.
I first read about the effect of sugars and simple carbs in a book written by Edward Hallowell, Driven to Distraction. It's a great book for those who have ADHD/ADD. However, one way to acquire ADHD/ADD... yep, you guessed it!... is from a mild traumatic brain injury.
I have seen first hand how much the brain 'changes' after a concussion - what makes me think that it hasn't changed how it responds to foods? Then again, ADHD/ADD is also genetic - and right before my accident, I had found out I have the genes. I changed my diet to eat less sugar and less cheese ravioli and cheap pizza - what a difference! So I know making healthy choices can be great!
If you don't want to 'diet,' eat as much vegetables as you want - just make sure you're eating better choices. Try veggies and whole grains. Vitamins and fiber. Proteins are important, too! Fish that contain Omega 3s are brain-tastic (especially SALMON! which I have learned to LOOOVE). Most artificial crab meat also has Omega 3.
Also, BB mentions exercise.
when it comes to my moods, but things like getting moving, going for a walk, etc. can make a lot of difference for me.
ADHD or not, exercise can alleviate a foggy mind, anxiety, depression, and just make you feel a little better.
How'd you find me?
The most common way people find me - is searching for "Happy Face" via Google. All because I linked a picture of that happy face on one of my posts. Oh brother!
But these search words that I stumbled on kinda made me laugh a little: "mtbi and quietly insane"
You don't even know the half of it. hahaha. Hope my site helped them a bit!
Read Personal Stories
I sometimes stumble on other blogs of people who are going through the same stuff. I find it comforting to read their struggles and know that I'm not alone and I'm not as crazy as I thought I was... or maybe I am - but everyone else is, too!
Here are a few that always check in :) Other links can be found under "Personal Stories" on the right.
I've mentioned him before - he was the first one I found!! And he has TONS of information dedicated to just Brain Injuries.
Also, I haven't done it yet, but I'm about to check out the video he has linked - a guy in the Boston area made a 6-part video of his TBI presentation he's been giving for a few years.
Always finding good stuff!! Thanks guys!
Sunday, August 24, 2008
Learning about mTBI
Helpful Hints:
1) Learn. Learn. Learn. Read everything you can about mTBI. After you've canceled out every diagnosis that doctors actually know something about... and TBI seems to be your last hope... READ, LEARN, QUESTION EVERYTHING YOU CAN FIND ABOUT IT.
2) Keep track of what you learn; you might forget later.
3) Find someone you can relate to - on the internet, in real life, in books. Justification for the problems you are facing can help a lot in recovery.
4) Know that you know what you're experiencing is real.
5) When people doubt your symptoms - Read and Learn all you can about what you're going through, and where you might be able to get help from someone who's seen the same problems before.
6) Stay tuned. I'm always reading to keep my brain functioning. If I find something good - I'll try to put it here!
7) I believe you.
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It breaks my heart to read about people with medical issues that are just not recognized. It breaks my heart to see people less fortunate than myself. It absolutely breaks my heart to know I am having these frustrating difficulties and absolutely struggling day to day... and then to pass by people who are visually more disabled than I. It makes me feel selfish. It makes me feel ignorant. It makes me feel needy and pitiful. I feel absolutely ungrateful and dramatized.
How could I stand here absolutely confused and uncomfortable when I am fortunate to have graduated college and live alone? How can I claim my physical strength or my cognitive skills have ceased from a once notable level; I am capable of reading, learning, writing and communicating in a way that I may seem outstanding still? My awkwardness is not often perceived by others and fishing for words is not easily noticed. How dare I feel I need help when I should be helping others??
It breaks my heart that in a time where I need the most help I've ever asked for, I still debate the necessity of putting myself first. It breaks my heart to have isolated myself from the thousands of people I used to know because I can no longer do favors for them or solve all their problems. I have isolated myself because I look so 'normal' and don't have the energy to waste on arguing with the people who knew the 'old me.' I have isolated myself because these people see what I see - other people who are visually more disabled than I.
Lastly, what breaks my heart more than for those less fortunate or my own struggling, I feel so much remorse and compassion for all of the people in the world who also feel lost and frustrated. I might have mentioned this before, but today in my daily "reading" I came across another example of someone going through the same frustrations... only four years after trying to adapt to his changes, had he started learning about mTBI and making sense of his issues.
This guy particularly interested me because he referred to himself as a "high-functioning" survivor. He's intelligent, had always been a hard-worker and persevered. Most takes I've read that are seemingly "most important" around this topic are stories about people who actually needed their head cut open, are now quadriplegic, lost all ability to read and write, or have to rely on other people. Very few instances have I found someone that does not fall into the "severe or moderate" category of their accident. Very few examples have been mentioned separate from those added to 'broad symptom' overviews. Very few have I been completely able to relate to.
He calls himself brokenbrillant; he started a blog with the same compassion I have for others just like him. I'm not sure how long he worked on what he's put down - but it's slightly more organized than mine. And he hasn't written anything since January... which I'm guessing has to do with him pouring so much energy into educating others with his blog that he "just couldn't" do it for a while. No big deal - maybe he'll be back to say more, maybe not.
He has written somethings that I swear I've said outloud and he just wrote the words...
I find his blog particularly humbling. Support groups are wonderful for any disability or particular subset of struggles. Dr. Ed Halowell - one of the gurues in ADHD psychology - started the first ADHD support groups and wrote about the amazing results his first 11 participants... or 16? I don't remember. These people were functioning and a little disorganized but clearly capable to live day to day - but were astounded to relate to others who understood them!
His blog is humbling because I need the support right now. A friend of mine whom I don't see often said to me a few weeks ago... "stop mentioning your problems, talk to me as if you're normal because I don't see or hear anything wrong with you." Although I'm sure his intention wasn't to hurt me, the fact is that I am stuggling. If I don't talk about it and work through it, or find ways around it, I feel lost. It's a big part of my life right now and I need support. I have not had the energy to quite find support groups at this time - but I read about another story of a former PhD in Economics, graduate from Duke and Yale. Her take on support groups:
As difficult as it is for me to 'take time to heal' and to put myself first for once, I need it. And there are other people out there that need it to. I left a comment for brokenbrilliant saying, "for what it's worth, I believe you." I hope to hear from him. And I hope sometime down the road I'll find a ton of other "high-functioning" TBI survivors that will give me another chance to say "I believe you." Because although it doesn't get less frustrating, I know it's worth a lot to be believed.
1) Learn. Learn. Learn. Read everything you can about mTBI. After you've canceled out every diagnosis that doctors actually know something about... and TBI seems to be your last hope... READ, LEARN, QUESTION EVERYTHING YOU CAN FIND ABOUT IT.
2) Keep track of what you learn; you might forget later.
3) Find someone you can relate to - on the internet, in real life, in books. Justification for the problems you are facing can help a lot in recovery.
4) Know that you know what you're experiencing is real.
5) When people doubt your symptoms - Read and Learn all you can about what you're going through, and where you might be able to get help from someone who's seen the same problems before.
6) Stay tuned. I'm always reading to keep my brain functioning. If I find something good - I'll try to put it here!
7) I believe you.
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It breaks my heart to read about people with medical issues that are just not recognized. It breaks my heart to see people less fortunate than myself. It absolutely breaks my heart to know I am having these frustrating difficulties and absolutely struggling day to day... and then to pass by people who are visually more disabled than I. It makes me feel selfish. It makes me feel ignorant. It makes me feel needy and pitiful. I feel absolutely ungrateful and dramatized.
How could I stand here absolutely confused and uncomfortable when I am fortunate to have graduated college and live alone? How can I claim my physical strength or my cognitive skills have ceased from a once notable level; I am capable of reading, learning, writing and communicating in a way that I may seem outstanding still? My awkwardness is not often perceived by others and fishing for words is not easily noticed. How dare I feel I need help when I should be helping others??
It breaks my heart that in a time where I need the most help I've ever asked for, I still debate the necessity of putting myself first. It breaks my heart to have isolated myself from the thousands of people I used to know because I can no longer do favors for them or solve all their problems. I have isolated myself because I look so 'normal' and don't have the energy to waste on arguing with the people who knew the 'old me.' I have isolated myself because these people see what I see - other people who are visually more disabled than I.
Lastly, what breaks my heart more than for those less fortunate or my own struggling, I feel so much remorse and compassion for all of the people in the world who also feel lost and frustrated. I might have mentioned this before, but today in my daily "reading" I came across another example of someone going through the same frustrations... only four years after trying to adapt to his changes, had he started learning about mTBI and making sense of his issues.
This guy particularly interested me because he referred to himself as a "high-functioning" survivor. He's intelligent, had always been a hard-worker and persevered. Most takes I've read that are seemingly "most important" around this topic are stories about people who actually needed their head cut open, are now quadriplegic, lost all ability to read and write, or have to rely on other people. Very few instances have I found someone that does not fall into the "severe or moderate" category of their accident. Very few examples have been mentioned separate from those added to 'broad symptom' overviews. Very few have I been completely able to relate to.
He calls himself brokenbrillant; he started a blog with the same compassion I have for others just like him. I'm not sure how long he worked on what he's put down - but it's slightly more organized than mine. And he hasn't written anything since January... which I'm guessing has to do with him pouring so much energy into educating others with his blog that he "just couldn't" do it for a while. No big deal - maybe he'll be back to say more, maybe not.
He has written somethings that I swear I've said outloud and he just wrote the words...
I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.
I find his blog particularly humbling. Support groups are wonderful for any disability or particular subset of struggles. Dr. Ed Halowell - one of the gurues in ADHD psychology - started the first ADHD support groups and wrote about the amazing results his first 11 participants... or 16? I don't remember. These people were functioning and a little disorganized but clearly capable to live day to day - but were astounded to relate to others who understood them!
His blog is humbling because I need the support right now. A friend of mine whom I don't see often said to me a few weeks ago... "stop mentioning your problems, talk to me as if you're normal because I don't see or hear anything wrong with you." Although I'm sure his intention wasn't to hurt me, the fact is that I am stuggling. If I don't talk about it and work through it, or find ways around it, I feel lost. It's a big part of my life right now and I need support. I have not had the energy to quite find support groups at this time - but I read about another story of a former PhD in Economics, graduate from Duke and Yale. Her take on support groups:
In Austin, Anne eventually attended a support group. At meetings, she looked around at the quadriplegics and others with severe head injuries and felt fortunate but not always supported.
As difficult as it is for me to 'take time to heal' and to put myself first for once, I need it. And there are other people out there that need it to. I left a comment for brokenbrilliant saying, "for what it's worth, I believe you." I hope to hear from him. And I hope sometime down the road I'll find a ton of other "high-functioning" TBI survivors that will give me another chance to say "I believe you." Because although it doesn't get less frustrating, I know it's worth a lot to be believed.
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